“Being treated as the expert:” A blueprint for a community advisory board approach to elevate the voice of people with living experience with substance use in academic research

Introduction: Researchers have traditionally engaged Community Advisory Boards (CABs) to meaningfully involve community members in the research process. However, CABs are often formed only after a grant is funded, leading to criticisms of functioning merely as "ethical approvers." For substance use researchers, the inclusion of people with living experience (PWLE; current experience with drug use) across all stages of research is especially important as they have historically been the experts in the needs of their community. Methods: In response to this need for community engagement in research, the University of Kentucky, in partnership with a local recovery community center (RCC; Voices of Hope), established the Survivors Union of the Bluegrass (SUB). The SUB is a stand-alone CAB (i.e., not tied to any particular research study) comprised of PWLE. Biannually, the SUB leadership team conducts quality improvement process evaluation focus groups with SUB members. Results: The SUB has held 33 monthly meetings with 52 university substance use research teams, all unanimously approved by members to attend. Members identified benefits to participating in the SUB, felt researchers treated them as experts, and supported other institutions establishing similar boards. Members also described feelings of belonging and empowerment, and valued being viewed as experts. Conclusion: To our knowledge, the SUB is one of the first CABs comprised of PWLE housed at a university that is not tied to a specific study or project. The SUB's high retention rate and member feedback demonstrate the benefit of meaningfully involving PWLE throughout the research process.